What YOU should know about GLUTEN SENSITIVITY
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Saw fibro mentioned in the thread....just a heads up - D-Ribose.
Don't hurt me cause it wasn't about gluten. Thanks. :ohwell:0 -
I laughed a really embarrassing loud laugh at this.
Heck if that is how it is judged then I am taco bell sensitive for the same reason....Well, I am not celiac but I can prove that I am gluten sensitive but the foul smelling gas that is emitted from my bowels when I eat gluten .... take my word for it or come visit after a cheat ... your choice :-)
Or just protein....that's what does me in.
Good Job0 -
What's really irritating is how judgmental some people can be. Yes, there are people who claim to be lactose or gluten intolerant and still eat dairy products or consume gluten products. But for those of us who genuinely are intolerant to those foods and would love to be able to consume them, it's intensely frustrating to be lumped in with the idiots who are playing around with "oh, I'm going gluten-free" as a preference, or thinking an upset stomach means they have a food intolerance. Some of us happen to be highly intolerant to such foods. I have gene pairs which make it possible that I might have Celiac disease but the biopsies, so far, have been negative. Even my GI says that Celiac is very difficult to diagnose. But since gluten makes me desperately ill even when it comes into contact with food I eat, it's best for me to avoid it. Hence, it's pretty insulting to be mocked as if I choose not to eat bread as a lifestyle choice because I think it makes me a little gassy. That's simply not the case.0
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What's really irritating is how judgmental some people can be. Yes, there are people who claim to be lactose or gluten intolerant and still eat dairy products or consume gluten products. But for those of us who genuinely are intolerant to those foods and would love to be able to consume them, it's intensely frustrating to be lumped in with the idiots who are playing around with "oh, I'm going gluten-free" as a preference, or thinking an upset stomach means they have a food intolerance. Some of us happen to be highly intolerant to such foods. I have gene pairs which make it possible that I might have Celiac disease but the biopsies, so far, have been negative. Even my GI says that Celiac is very difficult to diagnose. But since gluten makes me desperately ill even when it comes into contact with food I eat, it's best for me to avoid it. Hence, it's pretty insulting to be mocked as if I choose not to eat bread as a lifestyle choice because I think it makes me a little gassy. That's simply not the case.
^^this!!0 -
What's really irritating is how judgmental some people can be. Yes, there are people who claim to be lactose or gluten intolerant and still eat dairy products or consume gluten products. But for those of us who genuinely are intolerant to those foods and would love to be able to consume them, it's intensely frustrating to be lumped in with the idiots who are playing around with "oh, I'm going gluten-free" as a preference, or thinking an upset stomach means they have a food intolerance. Some of us happen to be highly intolerant to such foods. I have gene pairs which make it possible that I might have Celiac disease but the biopsies, so far, have been negative. Even my GI says that Celiac is very difficult to diagnose. But since gluten makes me desperately ill even when it comes into contact with food I eat, it's best for me to avoid it. Hence, it's pretty insulting to be mocked as if I choose not to eat bread as a lifestyle choice because I think it makes me a little gassy. That's simply not the case.
If you are genetically likely to have Celiacs, and gluten makes you feel like crap, you probably have Celiacs. I don't know why a thread about the possibility that a non-Celiac gluten 'sensitivity' might not be a real thing would upset you.0 -
What's really irritating is how judgmental some people can be. Yes, there are people who claim to be lactose or gluten intolerant and still eat dairy products or consume gluten products. But for those of us who genuinely are intolerant to those foods and would love to be able to consume them, it's intensely frustrating to be lumped in with the idiots who are playing around with "oh, I'm going gluten-free" as a preference, or thinking an upset stomach means they have a food intolerance. Some of us happen to be highly intolerant to such foods. I have gene pairs which make it possible that I might have Celiac disease but the biopsies, so far, have been negative. Even my GI says that Celiac is very difficult to diagnose. But since gluten makes me desperately ill even when it comes into contact with food I eat, it's best for me to avoid it. Hence, it's pretty insulting to be mocked as if I choose not to eat bread as a lifestyle choice because I think it makes me a little gassy. That's simply not the case.
well said, thank you mccindy :flowerforyou:0 -
I promised myself I wouldn't get involved in the conversation, but I really just want to thank you for this comment. As a non-glutie it becomes really difficult to understand how, without a serious health issue, people can have this 'I cannot have a drop of gluten or else!!!' mentality. I guess because my understanding is only how it relates to other things, like lactose for example. There are those who need an epi pen to the heart if they sip milk, but for most people it's 'let me take my pill before my ice cream' or 'I'll just have a small scoop otherwise it will upset my tummy'. That's the difference between an allergy and an intolerance to my understanding. So I don't fully understand how one can be 'intolerant' but on the same level of severity with an allergy or something as serious as celiac's.
Because most things in nature actually occur along spectra.
Autism is a spectrum disorder (not everyone professionally diagnosed with Autism is even remotely close to the screaming, rocking, non-communicative stereotype, in fact, a large percentage are high functioning and you may not even know it unless they tell you), PCOS is a syndrome (syndromes, by definition, mean that not everyone has every symptom or to the same degree of severity), depression ranges from mild to severe, hell, even normal states are actually ranges (normal human body temperature, for example, actually ranges between 97F and 99.5F). And even "true" allergic reactions have different ranges -- some people need an epipen to the heart from a single bee sting in order to survive, while others just need a Benedryl to handle the more localized reaction unless stung several times.
Your lactose example is another good one. Some people are fine with low-lactose dairy, such as certain cheeses, fermented products, or butter, but can't have high-lactose foods such as milk or ice cream, while others are so sensitive to lactose that they can't even have butter.
I could go on and on with examples of conditions and states that have a spectrum that still qualifies as a given state, but I think you get the idea.
From http://farrp.unl.edu/resources/gi-fas/symptoms-and-severity :The symptoms that occur during a food-allergic reaction will not always be the same. The nature of the symptoms and their severity depend upon several factors including the individual, the amount of the offending food ingested, the tissue receptors that are affected, and the length of time since the previous exposure. Some individuals tend to develop only mild symptoms while others may experience much more severe manifestations.
Additionally, not all food intolerances are isolated to intestinal reactions. That's actually part of what makes even "official" Celiac so hard to diagnose (and why the Celiac Society is ecstatic at the prospect of a 50% diagnosis rate by 2025), let alone NCGS (which doesn't have overt autoimmune response or intestinal damage, which is why it's currently eluding doctors and researchers).
I have a friend who has Celiac, but she still had to fight for years to get testing done, because her doctor insisted that she was "just getting over a bug" (due to elevated white blood cell count), and that's why she was lethargic and had brain fog, but she didn't have much in the way of intestinal distress. When she finally found someone to do the tests, both the bloodwork and the biopsy screamed Celiac.
And, regarding non-intestinal issues, from http://celiac.org/celiac-disease/dermatitis-herpetiformis/ regarding gluten-related skin reactions:Dermatitis Herpetiformis bumps and blisters resemble herpes lesions, hence the name “herpetiformis”, but are NOT caused by the herpes virus. Symptoms of DH tend to come and go, and it is commonly diagnosed as eczema. Symptoms normally resolve when on a strict, gluten-free diet.
DH affects 15 to 25 percent of people with celiac disease who typically have no digestive symptoms.
The National Foundation for Celiac Awareness also says this about NCGS vs Celiac:
http://www.celiaccentral.org/non-celiac-gluten-sensitivity/introduction-and-definitions/Humans are born with an innate immune system. An innate immune response is not antigen specific, meaning that it is nonspecific as to the type of organism it fights. Although its response is immediate against invading organisms, the innate immune system does not have an immunological memory to invading organisms. Its response is not directed towards self tissue, which would result in autoimmune disease.
Unlike non-celiac gluten sensitivity, celiac disease is antigen specific (including tissue-transglutaminase, endomysium and deamidated gliadin antibodies, and in some small children also gliadin antibodies) and does result in an attack on its own tissue. Intestinal damage, or enteropathy, is the direct result.
BMC Medicine, in the paper cited here - http://www.celiaccentral.org/research-news/collaborative-report-suggests-new-classification-for-gluten-related-disorders/ - states that NGCS is an "immune-mediated" disorder. This puts it in a similar position as such disorders as IBS/IBD, psoriasis, arthritis, certain forms of anemia, and others -- none of which have blood tests as either a single or contributing diagnostic tool; diagnoses are made by looking at the symptoms and ruling other issues out.
For both Celiac and NCGS, there can be non-intestinal effects, because of intestinal permeability. Our intestines are kind of like those soaker hoses (the kind that allow water to sort of "ooze" out throughout their length), things can pass out of them. Usually, those "things" are nutrients that the intestines have broken down into a usable form. The cells inside the intestine control what does and doesn't pass through. Sometimes, however, they don't work right (damage, disorder, or simply because the molecule in question looks similar enough to an authorized molecule), and unauthorized things get through. Once inside the rest of the body, the body sees the molecule as a threat and attacks it. The nature of the attack is largely what determines not only whether the person has an autoimmune disorder (the body then starts attacking itself), an immune mediated disorder (body doesn't attack itself, but suffers a certain amount of damage as a result of the attack on the foreign molecules), or an allergic response (histamine response), but also the nature and severity of the effects, as well as the delay of onset (instant vs delayed, anaphylaxis vs eczema/psoriasis flare-up vs anemia, etc).
Here's some more reading, for those who are interested:
http://www.ncbi.nlm.nih.gov/pubmed/24524388 -- IgG marker measurements of Celiac and NCGS subjects after going gluten-free
http://www.hindawi.com/journals/crii/2013/248482/ -- The overlap of CD, NCGS and Chron's Disease (which I think was mentioned here earlier)
thank you for so much information, I intend to look thru these tomorrow :happy:0 -
This entire thread reminds me of Migraine.
When I was 11 I had the first migraine with aura that I can remember. This was 43 years ago, and I was on vacation with my best friend in Lower GA. I remember throwing up, and complaining I couldn't see right. They put me in a big brass bed, with all the windows open (it was about 90 degrees in there) sun shining bright with a bare hanging light bulb directly above me.
After throwing up my breakfast of biscuits and sausage gravy, sausage, bacon, ham, chitlins (sp), eggs, fried potatoes, I buried myself deep within the comfort of the bed, knowing my poor mom was going to be so sad that I died while not with her. My head nearly exploded, my body tingled and I kept saying I saw all sorts of lights in front of my eyes.
Here was the conversation outside my bedroom door (insert heavy southern accent) "Well I wonder what type of drugs that girl is on! You know her momma is a drunk, so who KNOWS what she is probably taking. Probably that LSD stuff that makes you see rainbows and stuff"
I wasn't allowed alone with the cousins for the rest of the trip. I was 11 years old.
This continued thru high school when I complained to a teacher and she dragged me by my arm to the school nurse who looked at my pupils, heard my explanation of nausea and sparkly lights (aura) and pronounced I was tripping and should be sent home.
It took me 2 hours to walk 10 blocks, passing out in a neighbors yard and being dragged into my bed with a "Hrumph" that I was high.
When finally taken to a doctor mom was told to be a better parent, that I was on drugs and was self destructive. Headaches couldn't cause all these other symptoms (Headache? My head EXPLODED!!) and to keep a close eye on me.
At approx. 22 years old, while being examined by a gynecologist during my first pregnancy, I explained the symptoms I had. He said "Oh honey, you have Migraines! They are real, and not a headache, and much RESEARCH is being done on how to handle them!"
SOoooooooooo I guess for the 11 years before my diagnosis I didn't have migraines. I suppose until all the research was in (it is still on going, such as foods like gluten increasing the threshold) I do not have migraines.
They are all a figment of my imagination and I jumped on the Migraine bandwagon back when I was a child for attention and to be set apart from the rest. Get attention.
Uh huh. I am sorry but to me, one study doesn't prove a thing. It took 3 separate tests to tell the doctors I had a huge hole in my heart that caused a mini stroke. It was still THERE all along!
Give me more comprehensive studies, with larger groups and more "testing of fecal matter and blood" along the way. I think there is MUCH we are going to learn in the next 10 years about this issue.
For now. please hold the croutons on my salad. Thank You.
ETA:Posts by members, moderators and admins should not be considered medical advice and no guarantee is made against accuracy0 -
This entire thread reminds me of Migraine.
When I was 11 I had the first migraine with aura that I can remember. This was 43 years ago, and I was on vacation with my best friend in Lower GA. I remember throwing up, and complaining I couldn't see right. They put me in a big brass bed, with all the windows open (it was about 90 degrees in there) sun shining bright with a bare hanging light bulb directly above me.
After throwing up my breakfast of biscuits and sausage gravy, sausage, bacon, ham, chitlins (sp), eggs, fried potatoes, I buried myself deep within the comfort of the bed, knowing my poor mom was going to be so sad that I died while not with her. My head nearly exploded, my body tingled and I kept saying I saw all sorts of lights in front of my eyes.
Here was the conversation outside my bedroom door (insert heavy southern accent) "Well I wonder what type of drugs that girl is on! You know her momma is a drunk, so who KNOWS what she is probably taking. Probably that LSD stuff that makes you see rainbows and stuff"
I wasn't allowed alone with the cousins for the rest of the trip. I was 11 years old.
This continued thru high school when I complained to a teacher and she dragged me by my arm to the school nurse who looked at my pupils, heard my explanation of nausea and sparkly lights (aura) and pronounced I was tripping and should be sent home.
It took me 2 hours to walk 10 blocks, passing out in a neighbors yard and being dragged into my bed with a "Hrumph" that I was high.
When finally taken to a doctor mom was told to be a better parent, that I was on drugs and was self destructive. Headaches couldn't cause all these other symptoms (Headache? My head EXPLODED!!) and to keep a close eye on me.
At approx. 22 years old, while being examined by a gynecologist during my first pregnancy, I explained the symptoms I had. He said "Oh honey, you have Migraines! They are real, and not a headache, and much RESEARCH is being done on how to handle them!"
SOoooooooooo I guess for the 11 years before my diagnosis I didn't have migraines. I suppose until all the research was in (it is still on going, such as foods like gluten increasing the threshold) I do not have migraines.
They are all a figment of my imagination and I jumped on the Migraine bandwagon back when I was a child for attention and to be set apart from the rest. Get attention.
Uh huh. I am sorry but to me, one study doesn't prove a thing. It took 3 separate tests to tell the doctors I had a huge hole in my heart that caused a mini stroke. It was still THERE all along!
Give me more comprehensive studies, with larger groups and more "testing of fecal matter and blood" along the way. I think there is MUCH we are going to learn in the next 10 years about this issue.
For now. please hold the croutons on my salad. Thank You.
ETA:Posts by members, moderators and admins should not be considered medical advice and no guarantee is made against accuracy
I hear ya on that. I have a type of migraine that causes stroke like symptoms as well as a stomach disorder rarely seen outside of diabetics (I am not diabetic) and was just "tense", or "craving attention", or you name it. It took a lot of pushing to get the right testing and it was a big WHOOPS, well, I guess you weren't making it up after all.
I find the study interesting (though honestly not surprising), and it serves as a good JUMPING POINT into further research. It is not definitive, but raises some good questions. Also, I think a number of people with undefined "gluten sensitivity" may indeed be suffering from other issues. It's so easy to cling to something when you are so ill and desperate for answers, and our minds like to connect the dots, even when the connections aren't there. There are a lot of functional GI disorders out there that are just not well understood at this point. Certainly some people are just hypochondriacs, but I think there are others who are ill and fall prey to a placebo/nocebo effect with gluten in the search for what's really wrong.
Also, a quick aside, it may have been a typo, but gluten wouldn't increase your migraine threshold - that means you can encounter more triggers before ending up with a migraine - a good thing! If they are linking gluten to causing migraines, it would either be considered to be a trigger or to lower your threshold.0 -
What's really irritating is how judgmental some people can be. Yes, there are people who claim to be lactose or gluten intolerant and still eat dairy products or consume gluten products. But for those of us who genuinely are intolerant to those foods and would love to be able to consume them, it's intensely frustrating to be lumped in with the idiots who are playing around with "oh, I'm going gluten-free" as a preference, or thinking an upset stomach means they have a food intolerance. Some of us happen to be highly intolerant to such foods. I have gene pairs which make it possible that I might have Celiac disease but the biopsies, so far, have been negative. Even my GI says that Celiac is very difficult to diagnose. But since gluten makes me desperately ill even when it comes into contact with food I eat, it's best for me to avoid it. Hence, it's pretty insulting to be mocked as if I choose not to eat bread as a lifestyle choice because I think it makes me a little gassy. That's simply not the case.
you can blame all the other special people who ruined it for those that are celiacs, and they outnumber you greatly0 -
The two people that had gluten-specific reactions aren't statistically significant for the study, but they do help open the door for other studies that are more geared toward actually seeing if NCGS if real/testable (by raising questions like "why did these two people respond only to gluten, even on a low-FODMAP diet?" or "given Celiac's abysmal diagnosis rate, could these two people have undiagnosed Celiac, and can we find a new way to test for it?"), and (more to my original point) they refute the media's claim that the study "thoroughly proved that NCGS doesn't exist." If it actually did what the media claimed it did, then there wouldn't have even been those couple of people for whom biomarkers did change only for gluten.
No they do not. That's the entire point of statistical significance.
Are there questions raised by this study? Yes.
Is further research needed? Yes.
Do these two subjects have anything to do with it? Absolutely not. (Especially when you consider the fact that 7 of the participants reacted to the placebo arm but NOT the gluten arm).
At this point, I don't even know why you insist on arguing with me, when you are so clearly ignoring the point I had been making all along, so I'm just going to once again repeat what I said before.
The study did not (nor did it set out to) "thoroughly disprove the existence of NCGS." All it proved was that at least part of the diagnoses of NCGS may instead be FODMAP sensitivity, that the placebo effect works both ways ("nocebo"), and that more research is sorely needed in this area.
I have no issue with this point. ^^
I take issue with your original statement:The two people that had gluten-specific reactions aren't statistically significant for the study, but they do help open the door for other studies that are more geared toward actually seeing if NCGS if real/testable (by raising questions like "why did these two people respond only to gluten, even on a low-FODMAP diet?" or "given Celiac's abysmal diagnosis rate, could these two people have undiagnosed Celiac, and can we find a new way to test for it?"), and (more to my original point) they refute the media's claim that the study "thoroughly proved that NCGS doesn't exist." If it actually did what the media claimed it did, then there wouldn't have even been those couple of people for whom biomarkers did change only for gluten.
Statistically insignificant results do NOT "open the door to other studies" (nor do statistically significant results close said door).
If you're going to make a claim, and use statistical data to support your claim, make sure you understand statistics. Your point may be correct, but your argument is unsound.0 -
I am gluten intolerant. I experience severe inflammation in my joints, most specifically my knees. It's the kind of pain that keeps you awake all night. It doesn't hit suddenly, but seems to build up and hit after a few days of eating wheat flour and/or other products with gluten. I am anything but a health nut......However, I am motivated by pain and am willing to give up my beloved cookies and cake. Yes, I have since found tasty substitutes.0
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Well, I am not celiac but I can prove that I am gluten sensitive but the foul smelling gas that is emitted from my bowels when I eat gluten .... take my word for it or come visit after a cheat ... your choice :-)
I completely agree. If I have any kind of gluten, I feel extremely bloated and huge, and I get nauseous when I eat anything until that feeling goes away. If I eat enough of it, it actually messes with my blood pressure. I know, it's a bit odd, but its true. I am not a celiac, but gluten messes me up. If that's not a sensitivity, what is? I do have IBS, and this is part of that whole awesome deal, but I would still call it a sensitivity due to the fact that I can have a slice of pizza and not die, but two pieces ruins the rest of the day!0 -
For those who haven't been paying attention:
The participant in the study ALL felt better when they eliminated gluten. Yet NONE of them showed a gluten-specific response in both trials.
What makes you think you are any different?0 -
Yep, I know! I also don't get flare-ups from really tiny amounts of gluten. I got a massive flare-up from a gravy I thought was gluten-free, though, and when I asked if my friend had been honest with me about the gravy out of suspicion due to the flare up, she said "there was only a teaspoon of flour in the whole recipe", so I'm not sure exactly how small the amount of gluten needs to be in order for me to avoid a flare-up... so I just avoid it entirely.actually, re: beer - i have a skin disorder that flares up dramatically when i eat gluten. however, when i ingest SMALL amounts of gluten - like, for example, the amount that is in most beers - my skin disorder usually does not flare up. i still experience brain fog that lasts until the next day, but sometimes i ignore that symptom for the sake of having a beer. my body also does just fine with small amounts of most kinds of soy sauce.
Its due to the fermentation process when the beer is made as to why you don't get the flare ups.
Oh, I didn't mean to delegitimize your experiences! I was just speaking for my own experiences. I def appreciate that some people can DEFINITELY experience symptoms from beer. I just meant to illustrate to another poster that it is unfair to judge people who are gluten-free and still drink the occasional beer, because some of us don't really have very troubling symptoms from it due to the generally low amount of gluten left in the product after the brewing process.actually, re: beer - i have a skin disorder that flares up dramatically when i eat gluten. however, when i ingest SMALL amounts of gluten - like, for example, the amount that is in most beers - my skin disorder usually does not flare up. i still experience brain fog that lasts until the next day, but sometimes i ignore that symptom for the sake of having a beer. my body also does just fine with small amounts of most kinds of soy sauce.
Its due to the fermentation process when the beer is made as to why you don't get the flare ups.
IDK. When I first went off gluten there was a lot of trial and error, and research on my part. My son worked at a small craft beer place, and I went to spend an afternoon with him. Had a nice tall glass of something dark and delish.
Unfortunately, I was out of work for 3 days.
It kind of also goes to the people who said it might be psychological, as I hadn't the foggiest(pun intended)idea that the beer was full of gluten until I spoke with a friend.
I love beer :sad:0 -
This entire thread reminds me of Migraine.
When I was 11 I had the first migraine with aura that I can remember. This was 43 years ago, and I was on vacation with my best friend in Lower GA. I remember throwing up, and complaining I couldn't see right. They put me in a big brass bed, with all the windows open (it was about 90 degrees in there) sun shining bright with a bare hanging light bulb directly above me.
After throwing up my breakfast of biscuits and sausage gravy, sausage, bacon, ham, chitlins (sp), eggs, fried potatoes, I buried myself deep within the comfort of the bed, knowing my poor mom was going to be so sad that I died while not with her. My head nearly exploded, my body tingled and I kept saying I saw all sorts of lights in front of my eyes.
Here was the conversation outside my bedroom door (insert heavy southern accent) "Well I wonder what type of drugs that girl is on! You know her momma is a drunk, so who KNOWS what she is probably taking. Probably that LSD stuff that makes you see rainbows and stuff"
I wasn't allowed alone with the cousins for the rest of the trip. I was 11 years old.
This continued thru high school when I complained to a teacher and she dragged me by my arm to the school nurse who looked at my pupils, heard my explanation of nausea and sparkly lights (aura) and pronounced I was tripping and should be sent home.
It took me 2 hours to walk 10 blocks, passing out in a neighbors yard and being dragged into my bed with a "Hrumph" that I was high.
When finally taken to a doctor mom was told to be a better parent, that I was on drugs and was self destructive. Headaches couldn't cause all these other symptoms (Headache? My head EXPLODED!!) and to keep a close eye on me.
At approx. 22 years old, while being examined by a gynecologist during my first pregnancy, I explained the symptoms I had. He said "Oh honey, you have Migraines! They are real, and not a headache, and much RESEARCH is being done on how to handle them!"
SOoooooooooo I guess for the 11 years before my diagnosis I didn't have migraines. I suppose until all the research was in (it is still on going, such as foods like gluten increasing the threshold) I do not have migraines.
They are all a figment of my imagination and I jumped on the Migraine bandwagon back when I was a child for attention and to be set apart from the rest. Get attention.
Uh huh. I am sorry but to me, one study doesn't prove a thing. It took 3 separate tests to tell the doctors I had a huge hole in my heart that caused a mini stroke. It was still THERE all along!
Give me more comprehensive studies, with larger groups and more "testing of fecal matter and blood" along the way. I think there is MUCH we are going to learn in the next 10 years about this issue.
For now. please hold the croutons on my salad. Thank You.
ETA:Posts by members, moderators and admins should not be considered medical advice and no guarantee is made against accuracy
I hear ya on that. I have a type of migraine that causes stroke like symptoms as well as a stomach disorder rarely seen outside of diabetics (I am not diabetic) and was just "tense", or "craving attention", or you name it. It took a lot of pushing to get the right testing and it was a big WHOOPS, well, I guess you weren't making it up after all.
I find the study interesting (though honestly not surprising), and it serves as a good JUMPING POINT into further research. It is not definitive, but raises some good questions. Also, I think a number of people with undefined "gluten sensitivity" may indeed be suffering from other issues. It's so easy to cling to something when you are so ill and desperate for answers, and our minds like to connect the dots, even when the connections aren't there. There are a lot of functional GI disorders out there that are just not well understood at this point. Certainly some people are just hypochondriacs, but I think there are others who are ill and fall prey to a placebo/nocebo effect with gluten in the search for what's really wrong.
Also, a quick aside, it may have been a typo, but gluten wouldn't increase your migraine threshold - that means you can encounter more triggers before ending up with a migraine - a good thing! If they are linking gluten to causing migraines, it would either be considered to be a trigger or to lower your threshold.
Yes lower was the word I was looking for :blushing:
My migraines are caused not by one, but many triggers. The doctor explained it like a glass being filled with triggers. I had a tall glass prior to my nerve ablation and hardly ever hit the threshold. Now my threshold is a shot glass :sick:
I think removing the gluten (or maybe just a member of this group-wheat or whatever) has gain helped me not reach that threshold so quickly.
I do agree with you on this being one study, and much more must be done to determine what gluten is actually doing to the human body.0 -
For those who haven't been paying attention:
The participant in the study ALL felt better when they eliminated gluten. Yet NONE of them showed a gluten-specific response in both trials.
What makes you think you are any different?
Thanks for dumbing that down for me:flowerforyou:0 -
I promised myself I wouldn't get involved in the conversation, but I really just want to thank you for this comment. As a non-glutie it becomes really difficult to understand how, without a serious health issue, people can have this 'I cannot have a drop of gluten or else!!!' mentality. I guess because my understanding is only how it relates to other things, like lactose for example. There are those who need an epi pen to the heart if they sip milk, but for most people it's 'let me take my pill before my ice cream' or 'I'll just have a small scoop otherwise it will upset my tummy'. That's the difference between an allergy and an intolerance to my understanding. So I don't fully understand how one can be 'intolerant' but on the same level of severity with an allergy or something as serious as celiac's.
Because most things in nature actually occur along spectra.
Autism is a spectrum disorder (not everyone professionally diagnosed with Autism is even remotely close to the screaming, rocking, non-communicative stereotype, in fact, a large percentage are high functioning and you may not even know it unless they tell you), PCOS is a syndrome (syndromes, by definition, mean that not everyone has every symptom or to the same degree of severity), depression ranges from mild to severe, hell, even normal states are actually ranges (normal human body temperature, for example, actually ranges between 97F and 99.5F). And even "true" allergic reactions have different ranges -- some people need an epipen to the heart from a single bee sting in order to survive, while others just need a Benedryl to handle the more localized reaction unless stung several times.
Your lactose example is another good one. Some people are fine with low-lactose dairy, such as certain cheeses, fermented products, or butter, but can't have high-lactose foods such as milk or ice cream, while others are so sensitive to lactose that they can't even have butter.
I could go on and on with examples of conditions and states that have a spectrum that still qualifies as a given state, but I think you get the idea.
From http://farrp.unl.edu/resources/gi-fas/symptoms-and-severity :The symptoms that occur during a food-allergic reaction will not always be the same. The nature of the symptoms and their severity depend upon several factors including the individual, the amount of the offending food ingested, the tissue receptors that are affected, and the length of time since the previous exposure. Some individuals tend to develop only mild symptoms while others may experience much more severe manifestations.
Additionally, not all food intolerances are isolated to intestinal reactions. That's actually part of what makes even "official" Celiac so hard to diagnose (and why the Celiac Society is ecstatic at the prospect of a 50% diagnosis rate by 2025), let alone NCGS (which doesn't have overt autoimmune response or intestinal damage, which is why it's currently eluding doctors and researchers).
I have a friend who has Celiac, but she still had to fight for years to get testing done, because her doctor insisted that she was "just getting over a bug" (due to elevated white blood cell count), and that's why she was lethargic and had brain fog, but she didn't have much in the way of intestinal distress. When she finally found someone to do the tests, both the bloodwork and the biopsy screamed Celiac.
And, regarding non-intestinal issues, from http://celiac.org/celiac-disease/dermatitis-herpetiformis/ regarding gluten-related skin reactions:Dermatitis Herpetiformis bumps and blisters resemble herpes lesions, hence the name “herpetiformis”, but are NOT caused by the herpes virus. Symptoms of DH tend to come and go, and it is commonly diagnosed as eczema. Symptoms normally resolve when on a strict, gluten-free diet.
DH affects 15 to 25 percent of people with celiac disease who typically have no digestive symptoms.
The National Foundation for Celiac Awareness also says this about NCGS vs Celiac:
http://www.celiaccentral.org/non-celiac-gluten-sensitivity/introduction-and-definitions/Humans are born with an innate immune system. An innate immune response is not antigen specific, meaning that it is nonspecific as to the type of organism it fights. Although its response is immediate against invading organisms, the innate immune system does not have an immunological memory to invading organisms. Its response is not directed towards self tissue, which would result in autoimmune disease.
Unlike non-celiac gluten sensitivity, celiac disease is antigen specific (including tissue-transglutaminase, endomysium and deamidated gliadin antibodies, and in some small children also gliadin antibodies) and does result in an attack on its own tissue. Intestinal damage, or enteropathy, is the direct result.
BMC Medicine, in the paper cited here - http://www.celiaccentral.org/research-news/collaborative-report-suggests-new-classification-for-gluten-related-disorders/ - states that NGCS is an "immune-mediated" disorder. This puts it in a similar position as such disorders as IBS/IBD, psoriasis, arthritis, certain forms of anemia, and others -- none of which have blood tests as either a single or contributing diagnostic tool; diagnoses are made by looking at the symptoms and ruling other issues out.
For both Celiac and NCGS, there can be non-intestinal effects, because of intestinal permeability. Our intestines are kind of like those soaker hoses (the kind that allow water to sort of "ooze" out throughout their length), things can pass out of them. Usually, those "things" are nutrients that the intestines have broken down into a usable form. The cells inside the intestine control what does and doesn't pass through. Sometimes, however, they don't work right (damage, disorder, or simply because the molecule in question looks similar enough to an authorized molecule), and unauthorized things get through. Once inside the rest of the body, the body sees the molecule as a threat and attacks it. The nature of the attack is largely what determines not only whether the person has an autoimmune disorder (the body then starts attacking itself), an immune mediated disorder (body doesn't attack itself, but suffers a certain amount of damage as a result of the attack on the foreign molecules), or an allergic response (histamine response), but also the nature and severity of the effects, as well as the delay of onset (instant vs delayed, anaphylaxis vs eczema/psoriasis flare-up vs anemia, etc).
Here's some more reading, for those who are interested:
http://www.ncbi.nlm.nih.gov/pubmed/24524388 -- IgG marker measurements of Celiac and NCGS subjects after going gluten-free
http://www.hindawi.com/journals/crii/2013/248482/ -- The overlap of CD, NCGS and Chron's Disease (which I think was mentioned here earlier)
thank you for so much information, I intend to look thru these tomorrow :happy:
Thank you for the responses!
I guess the reason I'm having such a hard time understanding is that there seem to be a great deal of people who land all along that lactose spectrum. Gluten, from what I've seen (and I know that's an exceptionally limited sample) doesn't seem to have that spectrum the same as so many other things - I think I've met one person who has said 'I can't have more than a slice of bread otherwise I'll feel ill'. Allergy, intolerance, or just because: people who seem to have issues with gluten CANNOT HAVE ANY OR ELSE as opposed to the lactose spectrum referenced above.
Thank you again for your thoughtful comments and information. I really appreciate it.0 -
1. Celiacs =/= gluten sensitivity.
2. Gluten sensitivity =/= gluten allergy or wheat allergy.
3. Yeah, pretty much the latest studies have shown that people are very bad when it comes to self diagnosis, which is the only way to test for 'gluten sensitivity'. Pretty much, if you *think* you have it, you will think you feel better when you don't eat it.
Huh. Well for me, I called "BS" to my son when he suggested I remove gluten just to see, I laughed at him. Pointed out that it is just a fad, no truth or science behind it.
Not eating gluten is one of the hardest things I have ever had to do. I love a hoagie, a plate of pasta. Can do without the cake and muffins, but it is really hard to not be in the party when everyone is eating it.
I did not think in a million years removing any food item would make me feel better, but the truth is it did. I SO didn't believe that gluten was the cause of my problems that after 6 months I went back to eating gluten (slowly- slice of bread here, pasta there) By the end of 2 weeks I as back to higher symptoms.
Some day we will know more thru science I am sure, but for now........for ME.........I will stay away from it and enjoy the side effects of my craziness
There was no implication in my post that I think anyone who avoids certain foods that cause them discomfort is crazy. To me it sounds as if wheat might be an issue for you. If you feel better avoiding it, awesome.
Would you mind telling me what 'better' means? I really am curious.
Yes, certainly, I posted it earlier.
Arthritis pain in hands and feet gone. Migraines with aura reduced significantly (there is a threshold factor here with many things adding to the actual onset of Migraine, so I do not say gluten caused mine, only that removing it reduced the threshold) and my IBS has gotten better.
Mainly though the migraines and arthritis symptoms are the most significant.
I have IBS and migraines am thinking of trying the low-FODMAP diet. Your problem might not be gluten sensitivity per se, but rather a sensitivity to fructose, fructans, galactans, polyols and or lactose. I too can eat breads up to a certain point, after which my IBS begins to kick in.
Soooo... What is a low-FODMAP diet? IF we were curious to try it, is it really any different than the gluten free diet?
And... if you were a server in a restaurant, would you rather me ask for no croutons, or "Do your croutons contain FODMAP?"
Seriously, the poor folks that are being driven crazy by health trends affecting their jobs at restaurants think they are winning one... but how would you like it if you had GF and low-FODMAP clients to serve?
If there was perchance a disgruntled waiter on this thread (not saying there is...) his rebellion against GF living in hopes of making his job easier might just have the opposite result.
Could you be a little bit more irate? Because I'm not real good with subtlety. Plus I think you have me confused with someone else.0 -
Thank you for the responses!
I guess the reason I'm having such a hard time understanding is that there seem to be a great deal of people who land all along that lactose spectrum. Gluten, from what I've seen (and I know that's an exceptionally limited sample) doesn't seem to have that spectrum the same as so many other things - I think I've met one person who has said 'I can't have more than a slice of bread otherwise I'll feel ill'. Allergy, intolerance, or just because: people who seem to have issues with gluten CANNOT HAVE ANY OR ELSE as opposed to the lactose spectrum referenced above.
Thank you again for your thoughtful comments and information. I really appreciate it.
I think your sample size is just too small at this point. Lactose intolerance has been recognized for quite some time, but Celiac was unheard of until the last decade or so (despite it very much being around and written about for the past 2000 years). I remember when finding someone with Celiac was an anomaly. Growing up, I knew...one person (and I didn't meet her until I was in high school, and the only reason she got a diagnosis, I think, is because she was the poster child for it -- her GI disruptions were such that you could see things shifting around). Now? I know several with actual Celiac, and several more who claim some level of intolerance (myself among them). Part of it is simply awareness and realizing that the constant feeling of low energy, the arthritis at 25, the migraines, the eczema, etc. aren't just "that's life, those were the cards you were dealt," but rather that there might actually be a cause, and that lifestyle changes can fix or heavily mitigate the issue.
Additionally, there's also the stigma around the gluten-free thing (as if that wasn't blindingly obvious on this thread). Those of us who can eat small amounts of gluten -- even so far as the occasional slice of bread -- get called hypocrites, fad-followers, sheeple, or any other highly derogatory name people can think of. As others have pointed out, when out at restaurants, we're doing those with Celiac a disservice right now, if we don't hold waitstaff to the same standards Celiac people do, because we're not yet at the point where people aren't ignorant, arrogant, @$$holes over the matter. So, in general, it's easier to just say "I don't consume gluten at all," instead of trying to explain all the nuances all the time.
The fact that lactose intolerance is a spectrum is actually a good parallel. For example, my son can't handle milk or ice cream. It's got too much lactose in it, and he ends up on the toilet every fifteen minutes. However, he can eat most cheeses and other low-lactose dairy items, like butter, or small amounts of things that have milk as a small part of the recipe (such as cake). That's just simply where things fall on his tolerance threshold. If lactose intolerance was at the place where gluten intolerance is, right now, how many people here would be accusing him of the placebo effect, jumping on some kind of bandwagon, being a hypocrite (after all, if you're lactose intolerant, you must not be able to have any dairy at all)? We're beyond that point in our understanding of lactose intolerance, though. We've seen enough data points, we know enough people, and we understand the underlying mechanism of most cases to accept the fact that some people are less tolerant of lactose than others.
I am with gluten how my son is with lactose -- I can consume some things, or small amounts of certain things, and be okay, but prolonged exposure, or large doses start causing issues. I get some intestinal issues that are exasperated by medication that I'm taking, but the bulk of my issues are of other natures -- I have eczema that I've been able to directly trace to my consumption of gluten and dairy (it's fascinating, actually, because the gluten creates the itchy blisters, while a component of the dairy creates the dried-out texture, and I can prompt either or both by eating certain things), pre-arthritic inflammation symptoms (including some that have shown up on x-rays, but also tight joints, etc; definitely not normal for 26), acne, and migraines/cluster headaches.
I've found that I can have up to about three servings a week of some kind of gluten-containing item without too much issue as long as I stay away from it otherwise. I can also tolerate a certain amount of cross-contamination (up to about a serving a day of cross-contaminated items, such as oats), though I still try to avoid it entirely, largely because it's easier for me to just say "no" than it is to say "only a little" (and have to keep an eye on how much I've already had over the past few days), besides, in my opinion, a half dozen croutons or a bland dinner roll isn't all that appealing anymore, anyway.
In that aspect, it's like calorie counting -- is that dinner roll, made with refined white flour, yeast, sugar, and water, and not all that nutrient dense, really worth the 200 calorie "price" tag? If you've allotted 600 calories for your meal, probably not. Likewise, if I can have 6 units a day of gluten without adverse effects, and that roll has a price tag of 3 units, is it really worth it? Probably not (I'd rather have that 4-unit piece of chocolate cake if I have anything, because it tastes better).
Beyond that, or if I have too much too close together (like my recent foray to NYC, in which I had some authentic pizza, cheesecake, bagels, and used some bread to sample a kosher spread, over the course of about four days), the eczema starts coming back, as well as the headaches. If I ignore those symptoms and keep it up, the joint pain starts again, and the acne flares up. The eczema also continues to worsen and won't heal (even with corticosteroid cream) until I remove the offending foods again (this one I actually found out the hard way after weeks of trying to treat it with the cream, maxing out the length of time I can use it at once, and still not getting anywhere).
So yeah, there is a spectrum, but right now, it's just not as evident to those who don't personally deal with it. Maybe in another decade or so, it'll become more evident to "outsiders," as awareness and understanding increase and @$$hattery decreases.0
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